Vulnerability and the Consenting Subject: Reimagining Informed Consent in Embryo Donation

Hewer, Rebecca

doi:10.1007/s10691-019-09414-1

Cited by 4 publications

(8 citation statements)

References 47 publications

(91 reference statements)

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“…overlap, especially in queer studies and crip studies (Clare 2017;Piepzna-Samarasinha 2018). Embracing our mutual vulnerability as a shared human condition and being reminded that we all are constituted in and through relations to others can highlight our collective need for connection and care (Hewer 2019).…”

Section: Original Researchmentioning

confidence: 99%

How and why to use ‘vulnerability’: an interdisciplinary analysis of disease risk, indeterminacy and normality

Ford,

De Togni,

Erikainen

et al. 2023

Med Humanities

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In recent years, ‘vulnerability’ has been getting more traction in theoretical, professional and popular spaces as an alternative or complement to the concept of risk. As a group of science and technology studies scholars with different disciplinary orientations yet a shared concern with biomedicine, self and society, we investigate how vulnerability has become a salient and even dominant idiom for discussing disease and disease risk. We argue that this is at least partly due to an inherent indeterminacy in what ‘vulnerability’ means and does, both within and across different discourses. Through a review of feminist and disability theory, and a discussion of how vulnerability and disease both get recruited into a binary conceptualisation of normal versus abnormal, we argue that vulnerability’s indeterminacy is, in fact, its strength, and that it should be used differently than risk. Using COVID-19 management in the UK as an illustration of the current ambivalence and ambiguity in how vulnerability versus risk is applied, we suggest that instead of being codified or quantified, as it has started to be in some biomedical and public health applications, vulnerability and its remedies should be determined in conjunction with affected communities and in ways that are polyvalent, flexible and nuanced. The concept of vulnerability encapsulates an important precept: we must recognise inequality as undesirable while not attempting to ‘solve’ it in deterministic ways. Rather than becoming fixed into labels, unidirectional causalities or top-down universalising metrics, vulnerability could be used to insist on relational, context-specific understandings of disease and disease risk—in line with contemporary social justice movements that require non-hierarchical and non-universal approaches to problems and solutions.

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Section: Original Researchmentioning

confidence: 99%

How and why to use ‘vulnerability’: an interdisciplinary analysis of disease risk, indeterminacy and normality

Ford,

De Togni,

Erikainen

et al. 2023

Med Humanities

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show abstract

“…Over the years, this cognitive competence deficit approach has been criticized for failing to recognize capacity as situational, contextual, and relational. 22,40 In pursuing capacity in that way and embracing ambiguity in the process, we remove relying on the child to demonstrate adult-centric attributes, such as maturity, competence, autonomy, and completeness. We genuinely meet and listen to the child's (and their family's) unique ways of being and communicating.…”

Section: R E L Ationa L Ethic S a N D Ge N U I N E Con Ti N Uous Cons...mentioning

confidence: 99%

“…7 This way of working requires consent practices that recognize the epistemic standing of individuals in deference to their expertise in the affective experiences of their particular embodiments. 22 In this participatory project, we were mainly interested in what we call 'sites of expression and communication'. With Flora, we explored through concrete practices what she desires (activities she chose to do with us like picnicking, making photos or films with a GoPro camera), how she experiences the world, and what voice, communication, expression, and being in contact mean for her.…”

Section: R E L Ationa L Ethic S a N D Ge N U I N E Con Ti N Uous Cons...mentioning

confidence: 99%

“…We can draw on a long history of feminist and care ethics that foreground relationality and align ethical frameworks, especially informed consent and assent practices, with qualitative frameworks. As a result, the literature describes the significance of situational awareness, 35,36 creating enough space for critical reflections within the general ethical research framework 8,20,36 while also accepting vulnerability, 22 interdependencies and connection, 24,34 incompetence, 7 and ambivalence 18,26 in working with informed consent and assent. These scholars have in common that they reframe the purpose of obtaining informed consent and assent towards including rather than excluding.…”

Section: R E L Ationa L Ethic S a N D Ge N U I N E Con Ti N Uous Cons...mentioning

confidence: 99%

“…We genuinely meet and listen to the child's (and their family's) unique ways of being and communicating 7 . This way of working requires consent practices that recognize the epistemic standing of individuals in deference to their expertise in the affective experiences of their particular embodiments 22 . In this participatory project, we were mainly interested in what we call ‘sites of expression and communication’.…”

Section: Relational Ethics and Genuine Continuous Consentmentioning

confidence: 99%

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Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs

Goidsenhoven

Schauwer

2022

Develop Med Child Neuro

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There is a need for qualitative participatory research involving children with intellectual disability and complex communication needs (CCNs), but procedural ethics cannot always adequately respond to the associated realities. To tackle this challenge, procedural ethics can be expanded with relational ethics to engage with consent and assent practices in participatory research projects. By drawing on several key incidents of participatory research with children with CCNs, we explore the complex moral spaces and times of ambivalent and iterative (dis)engagements within research processes. We reconceptualize the consent/assent terrain as a relationally constituted process, more aligned with the overall epistemological frameworks of participatory research and ensuring (disabled) children's ongoing and meaningful involvement in research. What this paper adds Reconfiguring informed consent and assent is an ongoing and unfinished process. Both relational and procedural ethics are needed. Informed consent and assent represent an ongoing process, not a one‐time event. Respect for research participants demands that they be included in the analysis of the data and writing of the results.

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“Can we talk about surrogacy?” Legal Precariousness and Qualitative Research in the Biomedical Context

Mondal

2023

The Palgrave Handbook of Social Fieldwork

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Vulnerability and the Consenting Subject: Reimagining Informed Consent in Embryo Donation

Cited by 4 publications

References 47 publications

How and why to use ‘vulnerability’: an interdisciplinary analysis of disease risk, indeterminacy and normality

How and why to use ‘vulnerability’: an interdisciplinary analysis of disease risk, indeterminacy and normality

Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs

“Can we talk about surrogacy?” Legal Precariousness and Qualitative Research in the Biomedical Context

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